Posted in Family, Uncategorized

Waiting

I am not good at waiting. I don’t exist well in “pause”. I expect responses to be prompt and answers to my pleasing – don’t we all. If they aren’t, I have a tendency to badger and push thru until I’ve gotten my way. When my husband and I were discussing getting engaged, he told me that he’d do it in his own time and that each time I “reminded him” he was pushing his timeline back by two weeks. He’ll deny it now, but it happened.

I know badgering is a flaw. I know it shows a lack of maturity, lack of character, and as a woman who attempts to follow Jesus, it shows a serious lack of faith. I also know God is aware of my character flaw because he consistently puts people in my life who force me to abandon my own sense of time- ahem, example one, see above: man I chose to marry who , to this day, will purposefully not be rushed. Rushing him results in an opposite, but equal effect which will make us later than ever. This tendency to love people with no sense of expediency repeats itself ad nauseum and can be seen from my predictably running behind mother, to one of my closest friends from grade school who, while she has gotten so much better, used to drive me insane with her loose use of time to make plans. I love these people. I’ve grown because of them. My mom regularly praises me for my flexibility with waiting now. Waiting, the abuse of time, and I are zen.

Except none of the above growth was about my faith. God decided 2017 was the year I’d get to grow my faith, and he was going to use my most favorite thing to stretch me- waiting.

In January of 2017, I took our son in for his 18 month well check and learned that he’d apparently fallen off the growth charts. My husband and I do not make big babies, so it wasn’t like he had a long way to go, and he’d been in a downward decline for the past nine months, but this drop was significant, more than a few percentiles. Our pediatrician was concerned and suggested we go see a pediatric gastroenterologist at the local Children’s Hospital. Begrudgingly, I agreed. Two weeks later, we sat in the gastro’s office while she explained the same growth charts then she sent us to the lab for 14 tests.           It wasn’t the best day.

Thankfully, all the tests came back normal.

Except one, the alpha 1 antitrypsin test showed that Nolan had excessive protein loss which indicated he had an allergy to dairy protein.   The way this particular food allergy works is not the way a typical allergy operates; for example, Nolan won’t ever swell up and stop breathing if he has ice cream, but if dairy is in his system, his body will act as if he has a severe stomach virus and reject the majority of the nutrients he eats. Which explained why he couldn’t gain weight.Early childhood is one of the fastest, most important stages of human development; the fact that Nolan was labeled Failure to Thrive at 18 months was frightening. We were happy to have the Milk Protein Allergy diagnosis, and quickly adjusted.

In April of 2017, we dropped dairy ,  we because I was and still am nursing.  We attempted to give him the nutritional supplements that his gastroenterologist prescribed, but he refused them. Four weeks after we dropped dairy, we completed follow up testing to verify that his new diet had improved his numbers, but his test results showed he was still losing the highest recordable amount of protein possible (over 1.13) and his fecal calprotein number, which measures inflammation in the gut, was at 587 (normal is below 50).  So despite removing dairy , his numbers remained elevated;  he couldn’t gain weight because his body was continuing to dump his nutrition, and he was in pain. So, because soy protein closely resembles dairy, we cut soy in May at the recommendation of his gastroenterologist.

Soy almost broke me. Cutting dairy is relatively “easy” there are numerous replacements for cow’s milk at a standard grocery, most restaurants readily supply a dairy allergen menu, and as long as you can do without cheese- you can pretty much substitute everything else (side note, coconut milk “Ice cream” far exceeds the cow’s milk variety….). But soy? Soy is in everything. Literally . Go to your kitchen right now, grab five items you bought from the middle aisles of your grocery store and read the ingredients; you are looking for soy or soy oil…. I’ll wait…..  

Canned tuna? …. soy (yup, even the canned , or bagged tuna that is sitting in water. It has soy). Chips? You may get a pass on chips if you were lucky and grabbed one of the few brands that isn’t fried in vegetable oil ; otherwise, soy. Pasta sauce? Soy, unless it’s organic. Bread? Soy, soy, soy.

The soy allergy changed my life.  I spent two hours at the grocery, just reading labels. It took me four phone calls to find a restaurant that would accommodate our diet needs so we could take my mom out for Mother’s day. I got a bread maker for my birthday, and now I make our bread, and hamburger buns, and pizza dough (with non-dairy cheese!) because I didn’t want to spend 7$ a loaf on bread that was soy free at the grocery. The time reading labels was matched by the time on the phone or in front of the gastroenterologist and the nutritionist who both insisted that our son’s diet needed to be 60% supplemental formula ( “Then it’s not a supplement is it?” I snarked at the nutritionist)  that my son refused. Our five year old interrogated anyone who came near Nolan with food, “Does that have soy or dairy?!” I was impressed and saddened by his devotion.

And four weeks later (June), Nolan was still losing just as much protein, but his inflammation had dropped to 347, so he was still in pain- just less. I was crushed . Because if it isn’t a soy or dairy allergy, it’s something else that causes protein loss. Usually something far more complicated. Everything felt so hard and took so much effort. We couldn’t just go to a restaurant or a family function without planning ahead and investigating. But there was good news, he wasn’t losing weight. He was gaining slowly. When he wouldn’t take the supplement, that gastroenterologist repeatedly suggested she’d be forced to insert an NG tube into our son’s nose to force feed him . With support and some anger, I was able to remind the doctor that she wasn’t permitted to do anything to our son without our consent. We were willing to do testing. We weren’t willing to do an NG tube. Our gastroenterologist seemed surprised at my refusal. So I started to look for a new gastro.

Here’s the thing. There was something wrong. Clearly. Numbers showed it. Symptoms showed it. My husband and I didn’t deny that there was a problem. But everything in my body told me we needed more help, more resources, more TIME. That we had to wait.

And in my waiting, God confirmed that he was at work ( because that’s what we expect isn’t it? That the God of the Universe checks in with us. But he does it. Because he knows us, and he loves us. )

When I questioned whether we should move Nolan to a new gastro, I got confirmation from four different places in the same week. And this wasn’t generic confirmation I could have read into. It was four different people, who didn’t know each other saying, “You should look into xx hospital” . My mom witnessed three of those suggestions on the same day. It just happened that was the hospital we were considering. Confirmation.

When I worried about the poor nutrition causing irreparable harm to his developing brain, we had a developmental evaluation completed and he scored above the 95% in all domains.  Confirmation.

When I felt like I’d never be able to participate in social events again because I had no idea how to cook dairy and soy free, our friends and family stepped up and literally brought food to our house, or they went grocery shopping for us and spent time reading labels so we didn’t have to.  Confirmation.

 

Screenshot_20170806-153751

I don’t like waiting. I hate it. It makes me cry and bite my finger nails. But I learned years ago, that the Holy Spirit speaks to me through my intuition.

And everything in me said to wait.

Enter the narrow gate, follow the narrow path, and wait.

I know the allergists say it takes about 4 weeks for the effects of soy and dairy to exit the system.

That’s what our allergist and pediatric gastroenterologist told us too.

And his ped gi wanted to put him on an NG tube because he had slow weight gain.
We refused.

And continued the diet.

And found a new ped gi (who we see in 2 weeks).
And then on July 24th, at a well check, Nolan had gained 5 oz in one month, so I asked his pediatrician to run the tests again, just to see.

20170727_155829This is my beautiful two year old and I today after we found out that his super strict dairy and soy free diet was working.

His protein loss had dropped from greater than 1.13   to .52 and his inflammation was down from 347 to 21. Normal. His numbers were normal.

His body is retaining nutrients and proteins and while it’s not the only answer, we are on the right path.

Maybe the average kid takes four weeks to eliminate the affects of allergen20170731_195907s in their body. Maybe some take less, maybe some- like our son, take more.

Be encouraged. Because God doesn’t move the way we do. And sometimes, He uses things, like the specific  rhythm of a child’s own need, to show us who He is. He’s in the waiting, and he’ll meet us there .

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Author:

I have a Master's degree in Secondary Education, a Bachelor's degree in English, and a Secondary Ed teaching license. I also have a four year old son, a one year old son, a husband, and a cat. Let's see how those degrees help me manage my life..... Spoiler alert- they just decorate the walls.

One thought on “Waiting

  1. I have missed your writings. This entry shows not only your love for your family but also your tenacity to do what was best for Nolan. Thank you for taking your forum to show all of us God’s love and willingness to wait on us for our own good.
    My pride for you and who you are fills my heart more over time, which I did not think was possible.
    Your Mama

    Like

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